Taking every precious day as it comes

About

This blog is about the most important thing in my life: my family. In many ways it is a fairly ordinary family – one husband, one wife, three kids (two girls, one boy), two guinea pigs, dad working full-time, mum freelancing part-time. In many ways we are also fairly privileged: decent income, decent house, decent lifestyle.

Our second child, our son, was born profoundly disabled. Benjamin’s condition has no formal diagnosis, his condition is described by what his brain looks like under MRI: microcephaly with simplified gyrae and lissencephaly (i.e. a small, smooth brain with none of the usual folding). His symptoms include a very small head, hypertonia, gastro-oesophageal reflux, visual impairment, severe developmental delay and epileptic seizures. He is non-mobile, non-verbal, incontinent and fed through a tube into his intestine.

As a mother, this has changed my life in many ways, from my daily routine to my future career prospects to my outlook on life. I want to share those changes: how I feel, how they impact on me, on us, how we deal with them. It’s partly for my own benefit (I’ve always been the type of person who finds things are clearer and solutions appear when problems are written down). I also hope my readers will find something they might relate to or something to ponder.

This blog is called “the long chain,” a quote from Dickens’ Great Expectations:

“That was a memorable day to me, for it made great changes in me. But it is the same with any life. Imagine one selected day struck out of it, and think how different its course would have been. Pause you who read this, and think for a moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on one memorable day.”

Our lives are now a long chain of many links. The day we chose to keep Benjamin (we were offered a termination at 38 weeks pregnant. Yes, you read that right, 38 weeks) was a day that changed our lives. All three of our beautiful children have changed our lives, and I wouldn’t have it any other way.